Hello everyone, this problem may not be lyme related but you've all been so helpful to me that I figured I'd ask a possibly relevant question.
I came down with Bells Palsy back in July 2014. It went away after about 2 weeks but that's when I started noticing my other lyme symptoms appearing.
In February of this year I was coming home from a vacation with my family and on the 7 hour plain ride home I experienced a very painful migraine on the right side of my forehead, the same side of my face that had Bells Palsy. During the flight it felt like I had a lump on my head and like it was swollen. I didn't think much of it and assumed it would go away.
It is now October 2015 and that lump is still there and still hurts. The swelling is not too bad because people don't notice it, even if I point it out to them. For me I can clearly see and feel the swelling since I see myself in the mirror daily and have noticed the difference.
In the past few months it seems to have gotten worse. There is some slight swelling on the left side now too and some very slight pain. On the right side if I rub it I can feel a bump that goes in a line like a vein. This seems to be where the pain is coming from.
I've mentioned this to my doctor and even the LLMD I'm seeing now and both didn't seem to think anything of it.
I went to the ER a few weeks back because the pain was particularly bad and they ran a ct scan and didn't find anything. I've also had an mri which also showed normal results. No pain meds touch this and it's always there. The pain is sometimes mild and others not so much.
My question is, could this be lyme related? I'm being treated right now for lyme and my LLMD has me on Doxycycline and Tinidazole but I have not noticed an improvement.
I'm not inclined to believe that this was caused by the plane ride but I'm only mentioning it because that's when I first noticed it. Any ideas what this could be?
(breaking up your post for easier reading for many here)
[ 10-18-2015, 01:51 AM: Message edited by: Robin123 ]
Posted by poppy (Member # 5355) on :
When did your lyme treatment begin?
Posted by AndyR (Member # 46432) on :
quote:Originally posted by poppy: When did your lyme treatment begin?
My lyme treatement began on August 25th. I originally assumed it was lyme related and that it would go away but my LLMD told me that she has never heard of soft tissue swelling being caused by lyme. That's why if this issue is related to something else I'd like to find treatment for it.
Posted by poppy (Member # 5355) on :
There are a number of things that can cause Bells Palsy. Lyme is one of them, so my first thought was that you actually have had lyme longer. If the original tickbite was over a year ago, you will need extended treatment and it will take more time to see any changes.
It is also possible that you have more than one thing going on, tickborne or otherwise.
Bartonella can cause cause soft tissue swelling but not sure if that matches your location. Babesia can cause bad headaches that could be described by the victims as migraines. Did you have any visual aura with the migraine? These are both tickborne coinfections with lyme and the treatment you are on will probably not touch them, although doxy supposedly might help babesia.
Where did you go on vacation? Out of the country? To any lyme endemic places?
As you can see it is not easy to figure this out, and you have tried. But it is also clear something is going on.
Posted by AndyR (Member # 46432) on :
quote:Originally posted by poppy: Did you have any visual aura with the migraine?
Nope. There was a connecting flight before the long one. On the shorter flight I had a migraine and then on the long flight is where it got worse and felt like there was some swelling.
My family went to Rome for a week but we stayed within the city. I did have some strange symptoms that I just ignored before the Bells Palsy so I do agree that I've probably had lyme longer than when the Bells Palsy occurred.
My LLMD ran the tests for coinfections and she says they all came back negative. I'm not sure how reliable those tests were though.
[ 10-18-2015, 10:44 AM: Message edited by: AndyR ]
Posted by poppy (Member # 5355) on :
You are right to wonder about the coinfection testing. Do you have a copy of your tests? If not, get one and post the results here so we can see what exactly you were tested for and which lab.
[ 10-18-2015, 01:02 PM: Message edited by: poppy ]
Posted by AndyR (Member # 46432) on :
quote:Originally posted by poppy: You are right to wonder about the coinfection testing. Do you have a copy of your tests? If not, get one and post the results here so we can see what exactly you were tested for and which lab.
It was Quest Labs and I was tested for Bartonella, Babesia, and Anaplasma. The LLMD I'm seeing actually lost the results but said they were negative...I was kind of suspicious of that but she's been good so far about everything else.
Posted by poppy (Member # 5355) on :
You can now get your own copy of the test results from the lab without going thru the doctor, according to this Wall St Journal article:
This is so important and many people may not know it, so I am going to post it in a separate thread on the forum.
Posted by AndyR (Member # 46432) on :
quote:Originally posted by poppy: You can now get your own copy of the test results from the lab without going thru the doctor, according to this Wall St Journal article:
This is so important and many people may not know it, so I am going to post it in a separate thread on the forum.
Do you think just calling the lab will be enough for them to send the results?
Posted by poppy (Member # 5355) on :
I don't know. Have not tried this myself, didn't need to and used to live in a state where it was already legal to do it.
Ring them up and ask! Let us know what happens.
[ 10-18-2015, 04:22 PM: Message edited by: poppy ]
Posted by dbpei (Member # 33574) on :
AndyR you can create an account with Quest Labs and they will email your blood test results as soon as they are ready next time around! I don't know about past results though, when setting up this account.
I do believe that Lyme and other tick borne illnesses can affect the soft tissue. I have facial pain and swelling that changes from day to day, and sometimes gravitates to the bones in my jaw and skull.
But like you, I wonder if it could be another type of bacteria or even a virus or parasite. We have such a long way to go to figure this all out.